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3.02.2011

Number 5

I started writing this post a few days ago; apologising for taking so long to write, telling you how busy I'd been with uni and various other things. Then along came transplant call number 5 and that all went out of the window.

As usual, I had woken up at 4am when my overnight feed finished and went through the usual routine of turning the pump off, putting medicine down the tube, flushing it and then pulling the tube out. I was just settling back to sleep when I heard something, it took me a few seconds to realise that my mobile was ringing. I must have been so drowsy I couldn't think clearly because I picked it up and looked at the display as it rung off, there was a mobile number displayed on the screen. "Who the hell is that?" I thought "it can't be Harefield, they've never phoned at this time before!! Must be somebody trying to sell me something". Yes, I am completely stupid. I then thought "maybe it is Harefield" and after staring at my mobile for an instant turned to look at the house phone thinking that would be their next port of call. I jumped as my mobile rang again and answered it immediately. It was Harefield, they had a potential donor for me I had to get up to the hospital as soon as I could. I rushed into mum's room banging on the door and saying, "Get up, get up, GET UP". She admitted later that her first thought was that I couldn't sleep and had randomly decided to wake them up too, obviously stupidity runs in the family.

Nerves and excitement made me sick several times, which added to the general chaos going on, and mum cut her finger open on a bag zip which then proceeded to bleed profusely and leave a bloody trail along the banister which made it look like a murder scene. My oxygen levels (usually high 90's in a healthy person) had dropped to 79 after only a little movement so I was forced to sit, unable to help, until it was time to go. It took us an hour to get to Harefield. When we arrived I saw a lovely nurse who I had seen before on a previous call and was met by the co-ordinator who had phoned me, he said that they were waiting for news on the donor's tissue typing which should be back within the hour. I was weighed, had my ob's done and then it was time for bloods. I managed to get through about 12 of the 15 or so vials to fill before the vein failed and I was told I needed another sited. Just as they were about to do that, my co-ordinator came back, the donor was not a good enough match for me, the transplant wouldn't be going ahead.

I told them I didn't want anymore blood taken (there was no point now)and we packed everything back up to go home again. After travelling all that way, we were at the hospital for just half an hour.

To add insult to injury the journey home was horrendous. It took us just over an hour to get to Harefield but over three hours to get home. We were caught in school run/rush hour traffic, everywhere we turned was grid locked, long winding lines of cars. All we wanted was to get home to lick our wounds.

When we finally got back we were all exhausted and me more than anyone. I could barely crawl up the stairs and into bed. My back and hip were absolute agony and I had a thumping headache. Everytime I moved or coughed my hip would sear with pain, from sciatica caused by sitting for hours in the car. Mum brought me a bowl of water to wash my hands as I couldn't make it to the bathroom for a while. I felt so drained physically and mentally. Later on I managed a bath, I just felt so grubby. Then laid out on the bed for the rest of the day. I felt so empty and numb. As far as I knew the lungs that hadn't been any good for me had gone to someone who was a better match. While I didn't begrudge anyone, it hurt to know that someone else had heard the news I was so desperate to hear, that their transplant was a go ahead. I had come so close and yet my chance had slipped through my fingers once again.

For the first time in ages I didn't do my overnight feed. I fell off to sleep after not too long and had a decent night to recharge my batteries. Today I am still exhausted and will be for a few days to come. Nevermore so I have I felt the strain of the constant battle to stay alive. Every little thing sets me back physically, and mentally too, just when I feel I'm on more solid ground again something else comes along to spin me out of control. Then there's the long, ardous struggle to claw back what I have lost.

I've said before that the wait for transplant throws up so many emotions that you could never imagine it would. I never thought it possible to feel so many conflicting things at one time, to get so hopelessly lost in the logistics of it all, or to have my mood change so rapidly as it does now. False alarms like this intensify all these emotions. Hope dangled in front of you then replaced by bitter disappointment. Constant questions of whether the right call will ever surface, will i ever be called again? How much longer will this go on for? How will I cope? Today I have gone from shell-shocked, to angry, to crying, to smiling and a hundred things in between.

I heard earlier that the lungs in question were not used after all as there was a problem further down the line, which made it easier to bear in one instance but sad they couldn't help anyone in another.

A few weeks ago I went to my CF clinic and told them exactly how I'd been feeling. I saw the head of CF care, and discussed how I can see a slow decline from even a months ago. Since Christmas everything has got a bit harder, I rely on mum for more, and I can count on one hand the number of times I've ventured out. She told me that she felt my smaller airways were hardening now which would account for this, there is nothing else they can do to help this with medication.

Right back at call number 3 I had it in my head that 5 would be my lucky number, this unshakeable feeling that number 5 would be the one. I know now it wasn't. This makes it even more difficult. I am fed up of hearing the glibe words "it will be number such and such" that changes as every call goes by. I just hope that I will be one of the lucky ones, this can't carry on much longer.

20 comments:

It must be so Disheartening coming away from the hospital each time I just can't imagine what you are going through or why life is so difficult for you and not others. When I read about your 5th call though I thought to myself that calls are better than no calls at all and wondered even though they are so disappointing for you does it not keep you a bit encouraged that there the call will come. Rick.

Sorry to hear that the call was not the one you are waiting for.I know how you feel and as I read your post it brought it all back to me.It was number 8 for me!You cant say when it will happen but stay strong for when it does.I am thinking about you and wish you well.Look after yourself and when it is right for you it will happen

Hi Tor -- I found your blog after seeing it on the BBC news. I had no idea that you have to dash all the way down to the hospital just to be told it's a bad match. While I can't truly imagine what that's like, I am thinking of you.

Tor, you are in my thoughts and prayers so much. I don't know how you must be feeling right now but emotiOnally and physically exhausted, try and keep your strength up Hun I can't even bear to imagine how getting a false call must feel but like others say when the time is right it sure will happen and I have every hope and faith I'n you. You are such an inspiration never ever ever give up kp smiling and just taking it steady your time will come :) huge hugs Liz xxxx

Wishing you al the best Tor. Sorry that #5 wasn't the one but hopefully the next one will be. Keep smiling as you are a true inspiration. Thinking of you and praying that the next one will be the perfect match. You are a very courageous person.

I came across this blog through twitter. My cousin is also a CF sufferer and is too on the transplant list. He has been in the Royal Brompton for quite some time now, awaiting the phone call that you too are so eager to hear. All i can say is that you keep up the high hopes you have and maybe one day, like my cousin, you will get that magical phone call that will change your life beyond comprehension.

CF sufferers certainly have the heart of a Lion, when it comes to what you all have to go through.

Heya Tor, this is a bit of a tangent but why does your overnight feed finish at 4? I have a PEG too (for a completely different reason to you) and I set the speed so that it'll finish round about 9 when I'm ready to wake up. I know some people can't have their feed faster than a certain speed but I've never known someone not be able to turn the speed *down* to avoid the 4am wakeup problem!

Tonight I put mine on at 10 and I am having it at 90ml/hour so that it won't beep and wake me up - we all need our sleep, it can really screw with your immune system if you're never properly rested.

29 yEAR OLD, ASPIRING MUSICAL THEATRE ACTRESS! WITH A BIG LOVE OF PHANTOM OF THE OPERA,HENCE THE NAME OF THIS BLOG(A SONG FROM THE SHOW). I HAVE THE GENETIC CONDITION CYSTIC FIBROSIS WHICH WAS AT THE STAGE WHERE I NEEDED A DOUBLE LUNG TRANSPLANT TO SAVE MY LIFE. I RECIEVED MY MAGICAL CALL IN OCTOBER 2011. THIS IS A PLACE FOR ME TO RECORD THE HIGHS AND LOWS OF LIFE ON THE TRANSPLANT LIST, AND NOW MY NEW LIFE BEYOND IT.
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